I have had this on my mind a lot lately, and I am frustrated because I am not able to convey what I am feeling. As I drove home from Oncology clinic yesterday, listening to Ryan jabber mindlessly, I was reminded yet again of the huge difference in the developmental levels of my boys. They are only 5 years apart, but it’s more than that. It’s an ocean. It’s an eternity. It’s parallel lines, lines that will never quite meet.
I wonder sometimes about how special needs parents reconcile this. Ryan is 11, should be in 5th grade by now, but due to retentions because of school missed due to Leukemia and chemo, he is only in 3rd grade. This is OK…it’s what is best for Ryan. Developmentally, he isn’t even typical of a 3rd grader. I’m not saying this is awful. I’m just saying it’s hard to face sometimes, and it’s hard to keep up with ALWAYS.
Let me toss out a few examples:
1. One morning I had to put Shawn on a plane to San Antonio. He flew with his teacher and a classmate. I wanted to grab him and beg him not to grow up so fast, not to be so independent. An hour later, I dropped Ryan off at school, where his teacher told me they are having difficulty with his independence. He won’t do ANYTHING by himself without one to one attention. I am begging him to be more independent, wishing he would grow up just a bit.
2. Shawn will be a senior next year, so college brochures are strewn all over the apartment. We spent an hour the other evening discussing them, and then I grabbed Ryan for his homework, which was sight words. Hot, pot, not, cot…
3. Career choices must be discussed with Shawn. Midway through the most recent conversation, I looked up and Ryan was licking the dog. I had to stop with Shawn, and have a short conversation with Ryan about why it’s not OK to lick the dog.
4. They like me to listen to songs they like. Last night Shawn put headphones on me so I could hear this new composer that he found that writes music in 11/8 time. Ryan asked me a few minutes ago to listen to Ernie and Bert sing Rubber Ducky.
If this were simply an age thing, as Ryan gets older, the gap would narrow, until they are both in their 20’s and it would be gone. But that’s not the case. It’s never going to be the case. Shawn will never have a sibling his age, it will never be quite even. Shawn will eventually be Ryan’s guardian. And this, y’all, this just breaks my heart.
Shawn and I had a conversation tonight about things he might do different as a parent. I asked, because I am curious. He said that the number one thing he would do differently is make sure that his children have a childhood. Heart broken much? I wish that I could go back, wish a childhood for BOTH of them, one that wasn’t tarnished by disability and disease, that fairy tale childhood we all dream about. Shawn knows, as do I, that I have done the very best I can do given the cards I have been dealt. That doesn’t always help much. Shawn has learned a lot about life due to Ryan’s Down Syndrome and his Leukemia. Life lessons that he will need later. But yes, his childhood was ripped from him.
Ryan worships Shawn. But they are stuck right now at an uncomfortable place. Because Ryan is not a typical DS kiddo, Shawn’s expectations are high. Shawn has little tolerance for some of Ryan’s more annoying behaviors, and he is still jealous and resentful at times.
Today he was upset because he has a sublingual nodule that he wants removed and he wants it removed RIGH NOW. But we have to go through the process, and he said today how it’s not fair that Ryan never has to go through the process, everything is dealt with immediately. I told him that if he had cancer everything would also be an emergency and dealt with immediately, but since he doesn’t he just has to jump through the medical hoops like the rest of us mere mortals. He knows Ryan is OK right now, so he is safe lashing out at me a bit.
I don’t know how much the gap will ever narrow. Shawn is going to be more of a parent to Ryan one day then a brother. And just right now, I can’t reconcile it, I can’t swallow it, and it is not OK. I can’t change it, but at this moment in my life, it is just not OK.